Sunday, October 10, 2010

Thanks for all the comments!To be clear the genetic component is the one part that I don't have a lot of guilt about - except for obviously my choice in sexual partner - because I know she didn't get the gene from me. I don't have it and no one in my family going back at least 3 generations has ever been diagnosed with Type 1. Type 2 yes on my dad's side.It's more along the lines of the TEDDY study. Trying to figure out what triggered the genes to act up in the first place. Something in her environment caused her body to go into overdrive and start fighting itself. When she started out (no antibodies acting up) her chances were only 14%. 1 in 7 with the gene actually develop the disease in their lifetime. With the first antibody her chances rose. The latest testing was more extensive so we know that her odds are now greater then 50% and within the next 5 years.So what was it that I did, didn't do etc that other parents didn't do and did that made the difference? And what can I do that will put the odds back in her favor?She's not on any medications yet as she actually has a functioning pancreas now but they were talking about the possibility of putting her on oral glucose as part of a trial (which means she could have the placebo) to see if it will help prevent the disease. Her next TEDDY appointment is in two weeks so hopefully I'll have a lot more answers then. I'm going to call the doctor tomorrow (or Tuesday since I don't know about office hours with the holiday) to see if I can get answers sooner.I still have to test her blood sugar a couple times a month (daily if she's sick) and she'll have another glucose tolerance test in 6 months.

About Us

I'm a single mother with a 4 year old girl, Superhero Baby. Her name for herself. She can do anything. The problem? Her "father" is a Type 1 Diabetic and she has the gene. She's part of a study, so we know she is positive for all 3 antibodies. We've been told it's not "if" but "when". Odds greater then 50% that it will be within the next 4 years.
There is no support group for those standing on the edge of the cliff.
So I research and research and take my daughter in for her ogtts every 6 months, her antibody tests every 3 months and test her bg at home a couple times a week and hope.